Introduction

Residential aged care facilities (RACFs) are facilities that provide residential care to adults with cognitive and physical impairments, including long-term care homes, nursing care homes, special care homes, and hostels for the aged. The well-being of individuals living in RACFs is enhanced when choice and self-determination are built into their daily routines.1,2 The World Health Organization (WHO) recently identified autonomy3 and choice4 in older adulthood as priorities for public health worldwide. They encourage a global paradigm shift away from standardized care practices in RACFs, toward person-centered practices.3 Promoting self-determination is a priority action for RACFs seeking to ameliorate the lives of older adults, but it can be difficult to actualize. Even when choice and self-determination are viewed as ideal, staff's ability to honor client preferences may be constrained by organizational and regulatory factors that promote clinical efficiency and standardized practices.5 Self-determination includes opportunities for clients to communicate choices that are used to guide nurses' actions.

Promoting self-determination in RACFs is not without its difficulties in practice. Empowering clients to make choices looks quite different across cultural contexts, considering the unique and context-dependent definitions of autonomy and self-determination that are held around the world.6 Nurses are formal care providers who provide or direct personal care in RACFs. For the purposes of this review, it will include licensed nurses, registered nurses, practical nurses, nursing assistants, enrolled nurses, and advanced practice nurses. In virtually all countries, nurses are among the primary health care professionals responsible for ensuring clients understand the risks and benefits of treatments and behaviors.7 Research reveals that nurses are likely to overestimate client levels of satisfaction and believe that they have fostered higher levels of autonomy than clients actually experience.8 Fostering client choice also means providing supportive environments for clients to make choices that health care professionals might consider unwise.9 Unwise decisions are those that, from the perspective of health care professionals, do not promote safety and dignity. There is strong evidence that nurses tend to enforce compliance with certain practices they deem necessary (eg, bathing, toileting, medication administration), rather than facilitating client choice.10 While this persuasion to comply is often done with benevolent intentions, the repercussions for the well-being of the older adult can be significant. "Kind coercion,"11 as it is sometimes called in the literature, can impact older adults' mental health, increase responsive behaviors of dementia, and decrease overall perceptions of quality of life.8

In spite of strong beliefs in the importance of self-determination, many nurses describe their roles as protective in nature. They experience tension when client choices stand in the way of their perceived duty to protect.10 This tension is amplified in the formal care of people with cognitive impairments, such as those that result from Alzheimer's Disease.12 People with cognitive impairments are increasingly speaking out against their loss of decision-making power after diagnosis.13 It is now widely accepted that people with cognitive impairments are capable of making many care decisions for themselves in the early stages of impairment.14 This capacity becomes much less certain for people with advanced impairments, and practices continue in residential care for this population that have long been considered unethical for the rest of the population; for example, covert medication administration (hiding medications in food or drink) continues for this population, even though it is widely understood as violating a client's right to refuse treatment.15 The WHO notes that basic human rights are frequently denied to people with advanced cognitive impairments.3 These practices may persist because they are perceived as necessary to protect clients from making unwise decisions that their impairment is presumed to have facilitated. Research shows that nurses often experience distress and uncertainty when they struggle to balance professional responsibilities with ethical obligations to the client.10

A number of systematic reviews have explored issues similar to those proposed for review in this protocol, but to the authors' knowledge a comprehensive scoping review of the literature has not yet been conducted. Qualitative systematic reviews have been conducted about the experiences of informal caregivers and substitute decision-makers in making choices for loved ones with advanced cognitive impairments.16-18 Similarly, systematic reviews have also focused on advance care planning for cognitive decline, and caregivers' experiences negotiating advance care wishes alongside the client's current wishes.19-21 A number of systematic reviews22-26 and at least one scoping review27 address self-determination at end-of-life for clients living with cognitive impairments. Systematic reviews and protocols have also been published about shared decision-making in the context of person-centered care of older adults.1,2,14 These reviews focus on diverse practice settings, but they tend to exclude questions of reduced cognitive capacity. In reviews where these experiences are explored in the specific context of reduced capacity, the reviews tend not to be scoping in nature. For example, Daly et al.14 explored shared decision-making with people living with dementia in extended care facilities, but the authors limited their focus to original, empirical studies published about the topic, which excluded a wealth of literature that would be addressed in a scoping review. Ethical literature, expert opinions, and social scientific literature were explicitly excluded in a good deal of the systematic reviews noted above, which would offer insight into the ethical frameworks that shape nursing provisions for self-determination.

The existing literature on nurses' provisions for self-determination is extremely heterogeneous. To date, published reviews have either focused on a specific aspect of nursing care (eg, end-of-life care) or a specific type of study (eg, original qualitative research studies). This scoping review will map the existing literature more broadly in order to address nurses' provisions for self-determination in clients with cognitive impairment living in RACFs. This scoping review is timely, considering the WHO's recent insistence on the importance of self-determination in RACFs' practices worldwide.3,4 The findings of this scoping review will inform researchers about issues nurses encounter in the provision of person-focused care with people with cognitive impairments and may help derive conclusions and recommendations that are useful for clinical practice.

Review questions

The overall aim of this scoping review is to map nursing provisions for self-determination while providing care to clients with cognitive impairment who are living in a RACF. Specifically, the review will seek to answer the following questions:

i. What role does self-determination play in the delivery of nursing care with clients with cognitive impairment living in RACFs?

ii. What are the documented strategies that nurses use to negotiate self-determination in clients with cognitive impairment?

iii. Under what conditions do nurses perceive denial of self-determination in clients with cognitive impairment acceptable?

iv. What language do nurses use to describe challenges negotiating self-determination in clients with cognitive impairment who are living in RCAFs?

Inclusion criteria

Participants

This review will consider research and narrative reports on nursing provisions for self-determination in clients with cognitive impairment who are living in a RACF. Nurses will include licensed nurses, registered nurses, practical nurses, nursing assistants, enrolled nurses, and advanced practice nurses. Clients with cognitive impairment will include residents of a RACF identified as lacking cognitive capacity to make informed decisions. This impairment may or may not be the result of Alzheimer's disease or related dementias.

Concepts

The concepts that will be examined in this review are self-determination and nursing provisions. As noted previously, self-determination will include opportunities for clients to communicate choices that are used to guide nurses' actions. Nursing provisions will be any intentional reaction by nurses to choices expressed by clients. This may include, but not be limited to, activities performed during direct or indirect care, request for permission to provide care or deliver a treatment, conscious efforts to dismiss expressed choices, or covert activities used to disguise a treatment or activity.

Context

The scoping review will consider research reports and narrative papers that report on nursing provisions for considering and responding to self-determination in clients with cognitive impairments who are living in a RACF. Residential aged care facilities will include any setting identified as a residential care facility, including nursing homes, aged care facilities, hostels for the aged, and long-term care facilities. Only nursing provisions that take place in this setting will be included.

Types of sources

This review will consider quantitative and qualitative research, as well as text and opinion papers on the topic of interest. Quantitative study designs will include experimental and quasi-experimental study designs, including randomized controlled trials, non-randomized controlled trials, before and after studies, and interrupted time-series studies. In addition, analytic observation studies including prospective and retrospective cohort studies, case-control studies, and analytical cross-sectional studies will be considered for inclusion. This review will also consider descriptive observational study designs including case series, individual case reports, and descriptive cross-sectional studies. Qualitative studies will be considered that focus on qualitative data including but not limited to designs such as phenomenology, grounded theory, ethnography, qualitative description, action research, and feminist research.

Articles published in English will be included. Only papers published within the last 25 years (1995) onwards will be included as this time period is considered most relevant to the realities of modern gerontological nursing practice and the emphasis on self-determination in person-centered care.19 This time limit also reflects modern perspectives on including individuals living with dementia in decisions about their own care.13

Methods

This scoping review will be conducted in accordance with the JBI methodology for scoping reviews.28

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of CINAHL, PubMed, and ProQuest Nursing and Allied Health Source will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe articles. A second search using identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. If necessary, authors of identified papers will be contacted to obtain additional information.

Information sources

The databases to be searched in this scoping review are CINAHL (EBSCO), MEDLINE (Ovid), Academic Search Premier (EBSCO), Embase (Elsevier) and ERIC (EBSCO). Additionally, ProQuest Nursing and Allied Health Source, ProQuest Dissertations and Theses, and Google (with advanced search strategies) will be searched for gray literature. A full search strategy for CINAHL is included as Appendix I.

Study selection

Following the search, all identified records will be collated and uploaded into bibliographic software or a citation management system, such as EndNote V8 (Clarivate Analytics, PA, USA) and/or Covidence (Veritas Health Innovation, Melbourne, Australia). All duplicates will be removed. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Studies that meet the inclusion criteria will be retrieved in full and their details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full text of selected studies will be retrieved and assessed in detail against the inclusion criteria. Full text papers that do not meet the inclusion criteria will be excluded and reasons for exclusion provided in an appendix in the final scoping review report. The results of the search will be reported in full in the final report and presented in a PRISMA flow diagram.29 Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

Data extraction

Data will be extracted from papers included in the scoping review by two independent reviewers using a data extraction tool developed by the reviewers (Appendix II). The data extracted will include specific details about the participants, concept, context, strategy, study methods, and outcomes of significance to the review questions. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Authors of papers will be contacted to request missing or additional information where required. The draft data extraction tool will be modified and revised as necessary during the process of extracting data from each included paper. Modifications will be detailed in the full scoping review synthesis paper.

Data presentation

The extracted data will be presented in tabular form in a manner that aligns with the objective of this scoping review. The tables will report on: distribution of papers by year or period of publication, countries of origin, setting, purpose, participants, practice, research methods, strategy used, and student outcomes. A qualitative thematic analysis will be undertaken to provide an overview of the literature. A narrative summary of the tabulated results will help describe how the results relate to the review question. The findings will be discussed as they relate to research and practice. The JBI methodology for scoping reviews will be utilized for the synthesis of the data.28

Appendix I: Search strategy

CINAHL (EBSCO)

Searched on October 29, 2019. Limits: 1995 to present; English

Appendix II: Data extraction instrument

References